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Perhaps an important question is exactly what is being measured and whether the measurements are sufficient. To look, for example, at health records that would classify as MUS then that may indicate that the doctors seeing the patients didn't find a physical cause. But then we also need to look...

I did have in mind just having a doctor who would offer the basic services but I think you make an important point. As a parent with a child with ME (or I assume a patient first diagnosed, or not diagnosed) in trying to be taken seriously you can be driven to find a doctor who appears to offer...

Doctor shopping can be a necessity with ME to find someone who will take it seriously. In our case we changed GPs when the GP wouldn't follow the consultant paediatricians requests but the paediatrician wouldn't even do anything to sort that out past the letter he originally wrote. Of course...

I don't see the NICE guidelines as the issue here but the way GPs or other doctors don't feel the need to do even these basic tests. When my child was first ill my wife did end up reading the tests that the NICE guidelines specify to a doctor (at the children's hospital) who initially wasn't...

I think Crawley has an NIHR fellowship which basically pays for someone to replace her in her normal work so she can do research so I the NIHR aren't explicitly funding this I suspect. The Bath NHS foundation seem to be.

I think once a new version is published in May (Ok I don't really believe that will happen) then it may be worth some people getting together to write a detailed commentary on what is there, what has changed and also what the likely impression is it will give readers (e.g. concentrating on...

Yet it is still there and the warning is small. I wonder what the legal position is in that there comment suggests they know the work isn't up to standard but they are keeping the work published anyway. If someone were to rely on the review I wonder if they could be held liable for any issues or...

The BMJ have a really bad approach to patients with ME. For example, when the PACE data was released they commissioned Nigel Hawkes (a journalist) to write a nasty story and they didn't even publish a rapid response from Alem Matthees who got the data and who Nigel Hawkes claimed to have tried...

If someone presents symptoms of fatigue then the response should be to test for things that could cause fatigue; first looking at the most likely issues given an examination. The issues come when doctors are sold and have a tendency to believe in MUS hence their first assumption is that the...

I have a feeling that quite a few acute issues are classified as MUS when someone first sees a GP leading to early signs being ignored and late diagnosis. Although this isn't new. I came across a story of someone who had brain cancer who was dismissed as having stress headaches (I think that was...

Given my experience they don't even offer a service at the required legal level for home education and they may agree to other things such as online education but won't deliver.

I wonder if it is worth writing to the local education authorities in the area (who used to run the schools most will now be independent) for example Bath and North east Somerset https://www.bathnes.gov.uk/services/schools-colleges-and-learning...

I assume there will be a problem with this work in that many of the papers look back at past events and try to interpret and blame illness on previous events. Simply by asking people bias can be introduced.

The MRC and now the HRA are basically giving cover to PACE for their bad practices as they failed to pick them up at the time. I don't believe that they were accepted standards. In a way they need to say no one is to blame otherwise there are some embarrassing questions for their organizations...

I had assumed that the HRA were basically on the defensive as they authorized or rubber stamped the bad practices that PACE followed. So this is them marking their own homework and trying to avoid the issues. But I did think that some of the comments around but we will look at it further...

I think the REC are setting a dangerous precedent in that is say a drug company were to have a questionable drug then they could whip up some controversy and then claim that its to controversial to share data. But I guess the REC isn't like a court with case law instead they just pick and choose...

It makes me wonder if we should be asking the HRA to speak out about the misuse of their report.

The conversation is normally about the quality and reliability of the data along with the quality of the labelling. It could be biased but the point of it being a conversation between two groups is that those doing the ML can help to pull out the biases and of course they look carefully at the data.

With the coming of self driving cars you may need to rely on it (even as a pedestrian or other road user). More generally ML is becoming used in many solutions (even though it is not really robust enough) and that should worry us.

I think we have seen one thing here which is people training an ML model and then quoting how well it does on the training set. Or with regression pointing out which are the dependent variables with the biggest effects but without testing the model on independent data. There is also quite a lot...